Not only is G surprising me by singing all the words to Twinkle, Twinkle, Little Star all on his own and on his own agenda, he is also surprising me by carrying a tune and improvising to create new and more 4 year old boy friendly versions of the song. I am such a proud Mama! First- that he can sing all the words. That's huge for this little boy with APD who was only able to mimic the "to you!" part of the Happy Birthday song for years. Second- that he knows the melody and can actually sing quite nicely! I never knew that before. He often did monotone versions of songs we sing together or broke the words apart and overemphasized syllables to make a sort of rap version. Third- he's got a great imagination and he knows how to put it to use!
The latest version of he song tonight went like this: Twinkle, twinkle Robot. Twinkle twinkle Roooobot. How I wonder what you aaaare. Twinkle twinkle robot in the sky; how I wonder what you are. I thought it was quite charming, including, the "Good job, robot song." at the end.
Monday, November 23, 2009
Saturday, November 21, 2009
rabbit hole of words
It used to be, a long, long nine months ago that G didn't make "good" eye contact during conversations, especially in new situations and with strangers. (He did great when playing with toys or when we were using our fairly vast non-verbal communication means we had built up together over his 3 years.) He often wouldn't respond when I talked to him or he would look at me with a blank expression telling me something was wrong. I wasn't sure whether the blank expression meant that he didn't hear me, or he didn't care to listen, or he couldn't understand me, or he had just given up on verbal communication. Whichever option or options it was, it was painful to see and caused me quite a few hours of worry. We trudged along, getting confused and sidelined and not really sure which path to take.
I tried harder to reach him. I talked with more animation, louder. I signed (We had learned ASL together from when he was an infant and he understood quite a few signs). I got down on my knees and look into his eyes. Sometimes he reciprocated, sometimes he responded. Sometimes I saw the amazingly beautiful sparkle in his eye and realignment of his features meaning he understood me. And it was obvious how happy that made him, as well as me when it happened. He looked so proud, so pleased. He would shout and yell and wave his arms in celebration of successful exchange. I could tell the opposite was true when we weren't understanding each other. He would throw tantrums and cling to me. He didn't want to be apart from his Mama, who understood more than anybody else. He would glare in anger, frustration, and sometimes he would give up. There would be silence on his part, except his one word requests for simple things he needed like juice, hugs, cheese, and "No!" "No" was a big part of our mini conversations. It meant any of fifty different things, probably more. And it told me he wanted to be able to tell me more. So we kept trying, whatever, whenever, anything.
I read book after book after blog after blog about Autism, what the experts kept bringing up when they met G. My gut disagreed with this suggestion and most things I read pushed me to disagree more, as G just didn't seem to fit. But nobody could tell me what was going on, making me unable to dismiss the possibility of Autism. I searched and looked and asked questions and annoyed the school district. I'm positive they thought I was in denial of G's condition. Finally I happened upon a brief description of auditory processing disorder and it struck me that it seemed to fit with what I observed of G's language struggles at home. I emailed the speech therapist who wrote the article that very evening and we set up an appointment. She confirmed with no doubt he was having trouble processing auditory information. I was heartbroken (to hear that your child has a diagnoseable problem is hard) and thrilled at the same time. Finally! A direction to move in and a name for our struggles and a professional who could actually understand what was going on in G's little head. Ever since then our family has been making incredible progress.
Now, after speech therapy, patience, a lot of Time (this seems to be the most important factor in our journey through APD... G taking his time to process and us giving him that opportunity without interruption), lots of simplified conversations with picture and signing support at home, it's the other way around. I see the spark of understanding in his eyes more often than not. When he's tired, sick, when I have overdone the "exercises", when he's angry, the blank expression still shows up. He is temporarily unreachable except by hugs, like we've always done when nothing else works. He works so hard! So much effort all day every day for something that comes naturally to most of us. He tries again. He wants to "show me". G eagerly signs songs, tells stories, listens to me, teaches his little sister what the colors of the traffic lights mean. I am getting to know him more every day, even the parts I could only glimpse and guess at before. And I am so incredibly proud and grateful when I see comprehension break across his face like the sun coming up. Every time.
I tried harder to reach him. I talked with more animation, louder. I signed (We had learned ASL together from when he was an infant and he understood quite a few signs). I got down on my knees and look into his eyes. Sometimes he reciprocated, sometimes he responded. Sometimes I saw the amazingly beautiful sparkle in his eye and realignment of his features meaning he understood me. And it was obvious how happy that made him, as well as me when it happened. He looked so proud, so pleased. He would shout and yell and wave his arms in celebration of successful exchange. I could tell the opposite was true when we weren't understanding each other. He would throw tantrums and cling to me. He didn't want to be apart from his Mama, who understood more than anybody else. He would glare in anger, frustration, and sometimes he would give up. There would be silence on his part, except his one word requests for simple things he needed like juice, hugs, cheese, and "No!" "No" was a big part of our mini conversations. It meant any of fifty different things, probably more. And it told me he wanted to be able to tell me more. So we kept trying, whatever, whenever, anything.
I read book after book after blog after blog about Autism, what the experts kept bringing up when they met G. My gut disagreed with this suggestion and most things I read pushed me to disagree more, as G just didn't seem to fit. But nobody could tell me what was going on, making me unable to dismiss the possibility of Autism. I searched and looked and asked questions and annoyed the school district. I'm positive they thought I was in denial of G's condition. Finally I happened upon a brief description of auditory processing disorder and it struck me that it seemed to fit with what I observed of G's language struggles at home. I emailed the speech therapist who wrote the article that very evening and we set up an appointment. She confirmed with no doubt he was having trouble processing auditory information. I was heartbroken (to hear that your child has a diagnoseable problem is hard) and thrilled at the same time. Finally! A direction to move in and a name for our struggles and a professional who could actually understand what was going on in G's little head. Ever since then our family has been making incredible progress.
Now, after speech therapy, patience, a lot of Time (this seems to be the most important factor in our journey through APD... G taking his time to process and us giving him that opportunity without interruption), lots of simplified conversations with picture and signing support at home, it's the other way around. I see the spark of understanding in his eyes more often than not. When he's tired, sick, when I have overdone the "exercises", when he's angry, the blank expression still shows up. He is temporarily unreachable except by hugs, like we've always done when nothing else works. He works so hard! So much effort all day every day for something that comes naturally to most of us. He tries again. He wants to "show me". G eagerly signs songs, tells stories, listens to me, teaches his little sister what the colors of the traffic lights mean. I am getting to know him more every day, even the parts I could only glimpse and guess at before. And I am so incredibly proud and grateful when I see comprehension break across his face like the sun coming up. Every time.
Thursday, November 19, 2009
special ed. 16 ring circus
Yesterday I got to spend the afternoon in G's classroom. I was thrilled to have the opportunity, having spent many hours wondering what he does at school, if he has friends in his class, how the other kids behave, why he comes home wanting to push people, if he ever actually tries to write his name before giving up with a sullen frown like he does at home. (The whole list is actually quite a bit longer, but I think I'd better stop here.)
The teacher was home sick so the two aides and the speech therapist were trying valiantly to tame the herd of wild things teach the class. So I offered to stay and they seemed quite happy to accept. I was eager for a view of what goes on there and to get to know the kids a tiny bit, since up to this point the No Parents In the Classroom rule has been quite unwavering. There are sixteen kids in the class and it's just too many for three adults to handle. Especially because there are a good four or five with behavioral issues like intentional disruption, intimidating other kids, horribly foul language by choice (an imitation of what goes on at home, I'm guessing). In my opinion two of the kids should have a full time aide assigned just to them to keep them on track and give them the positive attention and redirection/supervision they need to participate, learn and not disrupt the class by yelling, jumping, screaming, running, throwing things and bullying the rest of the kids. I came home and told my husband that there was circle time, playdough time, general mayhem free play time, throwing fruit loops and dumping water on others and the floor snack time and finally wrestling and tackle tag playing outside. During the general mayhem half hour, there was jumping on tables and chasing and hitting games going on as well as a whole lot of screaming. It was happy screaming, but brought to mind an eagle dying. Also, general mayhem time was when the speech therapist worked with individual kids. No wonder they have trouble understanding where G is at. I don't know how they hear anything he says.
No wonder he comes home and punches his sister, pushes her, hits me, makes angry intimidating faces to try and get his way. I'm just baffled he hasn't started saying several four-letter words I heard at least 20 times from the other boys yesterday.
I wish my boy could be in a place more suited to him, his needs, his abilities. I wish every one of those kids had enough attention and care at school and at home. I guess that is what those teachers and aides deal with every day. The quiet kids don't get enough attention to succeed and the loud and badly behaved kids don't get enough attention to figure out how to settle down and direct their feelings and energy in better ways. There was one little girl there who is having trouble at home and had a frown plastered across her little face for the entire three hours, except the twenty minutes she was playing with the plastic food and kitchen, happily serving up donuts and green peppers with ketchup. It made me sad for her, and happy for my G. Happy that he comes home to a completely human but loving and interested mom and dad and sister.
I am appalled by what those teachers and aides aren't able to do for the kids. Not by their own fault but through lack of support from the school. It's crazy that we don't take better care of resources, for everyone's sake. I will make suggestions, and offer to help and ask questions and whatever else I can do. And I will offer to bring a big donation of clothes that we've outgrown for those poor kids who dirty themselves at school and don't have any clean clothes from home in their cubby. But I won't fight the school. It's not worth it, fighting for what my kid needs and making those who make decisions even less inclined to help the teachers and the kids. I will find another place where they want to and can work with me to make things better, to make things work. I want to find a place where providing what my kid and other kids need is not a fight, but a happy partnership with available resources. I will look for the right place instead of fighting the wrong one. But if (I hope it's when) G does leave the school he's at this year, I know I will think of the other kids and the teachers, who are trying their best and dream of better places for them too.
The teacher was home sick so the two aides and the speech therapist were trying valiantly to tame the herd of wild things teach the class. So I offered to stay and they seemed quite happy to accept. I was eager for a view of what goes on there and to get to know the kids a tiny bit, since up to this point the No Parents In the Classroom rule has been quite unwavering. There are sixteen kids in the class and it's just too many for three adults to handle. Especially because there are a good four or five with behavioral issues like intentional disruption, intimidating other kids, horribly foul language by choice (an imitation of what goes on at home, I'm guessing). In my opinion two of the kids should have a full time aide assigned just to them to keep them on track and give them the positive attention and redirection/supervision they need to participate, learn and not disrupt the class by yelling, jumping, screaming, running, throwing things and bullying the rest of the kids. I came home and told my husband that there was circle time, playdough time, general mayhem free play time, throwing fruit loops and dumping water on others and the floor snack time and finally wrestling and tackle tag playing outside. During the general mayhem half hour, there was jumping on tables and chasing and hitting games going on as well as a whole lot of screaming. It was happy screaming, but brought to mind an eagle dying. Also, general mayhem time was when the speech therapist worked with individual kids. No wonder they have trouble understanding where G is at. I don't know how they hear anything he says.
No wonder he comes home and punches his sister, pushes her, hits me, makes angry intimidating faces to try and get his way. I'm just baffled he hasn't started saying several four-letter words I heard at least 20 times from the other boys yesterday.
I wish my boy could be in a place more suited to him, his needs, his abilities. I wish every one of those kids had enough attention and care at school and at home. I guess that is what those teachers and aides deal with every day. The quiet kids don't get enough attention to succeed and the loud and badly behaved kids don't get enough attention to figure out how to settle down and direct their feelings and energy in better ways. There was one little girl there who is having trouble at home and had a frown plastered across her little face for the entire three hours, except the twenty minutes she was playing with the plastic food and kitchen, happily serving up donuts and green peppers with ketchup. It made me sad for her, and happy for my G. Happy that he comes home to a completely human but loving and interested mom and dad and sister.
I am appalled by what those teachers and aides aren't able to do for the kids. Not by their own fault but through lack of support from the school. It's crazy that we don't take better care of resources, for everyone's sake. I will make suggestions, and offer to help and ask questions and whatever else I can do. And I will offer to bring a big donation of clothes that we've outgrown for those poor kids who dirty themselves at school and don't have any clean clothes from home in their cubby. But I won't fight the school. It's not worth it, fighting for what my kid needs and making those who make decisions even less inclined to help the teachers and the kids. I will find another place where they want to and can work with me to make things better, to make things work. I want to find a place where providing what my kid and other kids need is not a fight, but a happy partnership with available resources. I will look for the right place instead of fighting the wrong one. But if (I hope it's when) G does leave the school he's at this year, I know I will think of the other kids and the teachers, who are trying their best and dream of better places for them too.
Friday, November 13, 2009
choosing our battles
This is something I think about all day every day with a very stubborn (entirely my fault, I'm positive) 4 year old and an opinionated and teething (read: very very very cranky) 2 year old. I used to have all these expectations. Crazy things, really, like wearing pajamas to bed, not eating chicken nuggets before 10 a.m., and regular toenail clipping.
Before I was a mom, things usually went according to plan and I realize now, my life and state of mind were severely lacking in spontaneity. Now, I am flexible by necessity. I've learned that it is much easier to make deals, to bargain, to compromise with my 4 year old if it's not a matter of life and death or severe spoiling. He needs a part in decision making in his life and in our family. It makes him happier, more confident, and more willing to listen when I say no and it's important. So, some nights he wears pants and t-shirts to bed. Some mornings my 2 year old has chicken nuggets (well, veggie chicken nuggets) and peas for breakfast and there is a set of very long toenails in the house.
The 4 year old is working on a mean set of negotiation tactics for future use. A few weeks ago he tried to bargain with me... he offered that he would eat a cookie and then I would play cars with him. Last night he tried to make a deal with me that he would put on his shoes (which he didn't want to do) in return for playdough. Soon he'll be negotiating for computer games and talking politics with me. And I'm thrilled by all this because my kids feel listened to in our house, which makes us all happier.
Before I was a mom, things usually went according to plan and I realize now, my life and state of mind were severely lacking in spontaneity. Now, I am flexible by necessity. I've learned that it is much easier to make deals, to bargain, to compromise with my 4 year old if it's not a matter of life and death or severe spoiling. He needs a part in decision making in his life and in our family. It makes him happier, more confident, and more willing to listen when I say no and it's important. So, some nights he wears pants and t-shirts to bed. Some mornings my 2 year old has chicken nuggets (well, veggie chicken nuggets) and peas for breakfast and there is a set of very long toenails in the house.
The 4 year old is working on a mean set of negotiation tactics for future use. A few weeks ago he tried to bargain with me... he offered that he would eat a cookie and then I would play cars with him. Last night he tried to make a deal with me that he would put on his shoes (which he didn't want to do) in return for playdough. Soon he'll be negotiating for computer games and talking politics with me. And I'm thrilled by all this because my kids feel listened to in our house, which makes us all happier.
Thursday, November 12, 2009
feeling goofy
When we arrived at school today, G was unhappy. He didn't want to let go of me and he did not want to wash his hands. He whined, he asked me to pick him up, he collapsed on the floor in misery. Since it's important to wash his hands I kept asking and steering him toward the sink but he didn't want to even after the rest of the class had clean hands and was reading books. So his teacher came over and asked if he was ready. He didn't respond so as I was walking out the door she picked him up and asked him if he was feeling goofy today. Say what?! This is the same teacher I have noticed calling some of her students sweetheart during school. I understand that she cares about these kids and I'm so glad she does. And some of them need a lot of help and patience, but each one of these kids who have been labeled Special Needs is a person deserving of the same respect as anyone else. Sugaring things up with cutesy nicknames and watered down language for their emotional states isn't going to help these boys and girls. It's going to make it harder for them to interact with people, to take themselves seriously, to be taken seriously.
I call my own, my husbands, my friends and relatives and my kids' feelings by the most honest terminology I can come up with. I believe kids' emotions are as strong as mine and that they should understand those emotions as much as possible. When G is whining and frowning and lying on the floor crying I call it sad, or angry or unhappy or frustrated. When he is grinning and singing and prancing around the house I call it happy or proud. I wish other people would treat kids the way they would like to be treated (My mom said that so many times to me as a kid... it's stamped onto my thoughts). If I'm in a bad mood, I would be offended if someone said to me "Hey, are you feeling goofy today?" In fact I'm pretty sure I'd shoot them one of my best glares. If I'm in a bad mood, I call it a bad mood. I want my kids to be able to call what they're feeling by it's best name and not a pet name, a sugared-up name that doesn't make a whole lot of sense but sounds less scary. I'm not scared of my kid's unhappiness, or my own. It took G three years to tell me he was sad, and I celebrated his ability to recognize his feelings and put them into words (while I gave him a hug and asked why he was sad).
There's a lot of power in knowing what you feel and being able to call it by it's name. It makes it easier to figure out where sadness or anger came from and maybe how to start getting it out and letting it go so you can feel happy. I wish that Special needs kids, neurotypical kids, every human being was able to and comfortable with talking honestly about emotions, their own and others. Emotions are not something to be afraid of, but instead something to embrace and learn from. Now please excuse me to go prepare further for our extended course in Emotional Honesty as applied to How to Share Mama's Lap, Legos and Plates of Potato Chips.
I call my own, my husbands, my friends and relatives and my kids' feelings by the most honest terminology I can come up with. I believe kids' emotions are as strong as mine and that they should understand those emotions as much as possible. When G is whining and frowning and lying on the floor crying I call it sad, or angry or unhappy or frustrated. When he is grinning and singing and prancing around the house I call it happy or proud. I wish other people would treat kids the way they would like to be treated (My mom said that so many times to me as a kid... it's stamped onto my thoughts). If I'm in a bad mood, I would be offended if someone said to me "Hey, are you feeling goofy today?" In fact I'm pretty sure I'd shoot them one of my best glares. If I'm in a bad mood, I call it a bad mood. I want my kids to be able to call what they're feeling by it's best name and not a pet name, a sugared-up name that doesn't make a whole lot of sense but sounds less scary. I'm not scared of my kid's unhappiness, or my own. It took G three years to tell me he was sad, and I celebrated his ability to recognize his feelings and put them into words (while I gave him a hug and asked why he was sad).
There's a lot of power in knowing what you feel and being able to call it by it's name. It makes it easier to figure out where sadness or anger came from and maybe how to start getting it out and letting it go so you can feel happy. I wish that Special needs kids, neurotypical kids, every human being was able to and comfortable with talking honestly about emotions, their own and others. Emotions are not something to be afraid of, but instead something to embrace and learn from. Now please excuse me to go prepare further for our extended course in Emotional Honesty as applied to How to Share Mama's Lap, Legos and Plates of Potato Chips.
Monday, November 9, 2009
hallway thunder
A few days ago, G and L decided it would be a completely and totally awesome idea to roll all of their marbles down the hall. At once. So they collected the marbles, two dump trucks and headed to the end of the hall and proceeded to spend the next hour bowling with handfuls of marbles at a time, pushing them with blocks and filling up the trucks and then dumping loads of marbles to careen down the linoleum. It was loud... very very loud. Wishing we had a supply of earplugs in the house loud. I cringed a few times, but mostly I was thrilled because they were happily playing together, taking turns, working together. They have found a special world together, where they can share and play and imagine with each other and have even more fun than with mom and dad.
There is not much I like better than to watch them enjoy one another, even if it is the cause of a few headaches. I believe that as time goes on, the best person to help G with his social skills, his language and APD in general may be his little sister. She understands him better than I do sometimes and there's nothing in the world she wants more than to follow his every move and ask him lots of questions! I can't wait to see (and hear) what they come up with next.
There is not much I like better than to watch them enjoy one another, even if it is the cause of a few headaches. I believe that as time goes on, the best person to help G with his social skills, his language and APD in general may be his little sister. She understands him better than I do sometimes and there's nothing in the world she wants more than to follow his every move and ask him lots of questions! I can't wait to see (and hear) what they come up with next.
Friday, November 6, 2009
to school, or to another school?
Today I put in an application for G to go to an alternative program within the local school district, one that is about community and individualized learning and family involvement in education. This program (I hear music in my head every time I think of it) is an amazing place for children, considering each person's needs and taking the idea of learning can be fun seriously. It has many similarities to the alternative (okay, maybe a little bit hippie) college where my husband and I met. I really hope we can get in since I don't believe that a typical class would have enough support and individual awareness and care for him to succeed. As his Auditory Processing disorder causes him to need more repetition and extra eye contact and a whole lot of patience and understanding, a lone teacher with thirty loud kids just isn't going to be able to meet his needs, and probably not even really understand where he's at, what he can and can't do.
He's in a Special Education preschool now and I'm not very happy with it. I mean, they are very patient and he loves being part of a class and being with other kids (besides his sister) but. But it's not the right fit for him. Their expectations are so low. The other kids need a lot more attention and help, so he gets less. The other kids have the same or lesser verbal skills and so they aren't helping him develop his communications. Parents aren't welcome in the classroom. It's just not right for him, for us.
If we can't get into the alternative program it will mean homeschool next year, taught by moi. Which I'm terrified of doing, as I feel very underqualified and which I am also loathe to do because he needs social interactions in a classroom. It's so important for his communication development and for his self esteem and so many other aspects of his development.
In the meantime, we are waiting to see if we get in. We are waiting, as always, to learn where the next leg of this journey will take us. It felt good to decide to try to get in the program now. My personal experience in most things has been that safe is sorry and I think it applies. I want to school dangerously, and parent wherever and however G takes me. Like the story of The Runaway Bunny, I am determined to find a place to fit into each day of his, each mood of his, each new challenge. To love him in whatever way he needs.
He's in a Special Education preschool now and I'm not very happy with it. I mean, they are very patient and he loves being part of a class and being with other kids (besides his sister) but. But it's not the right fit for him. Their expectations are so low. The other kids need a lot more attention and help, so he gets less. The other kids have the same or lesser verbal skills and so they aren't helping him develop his communications. Parents aren't welcome in the classroom. It's just not right for him, for us.
If we can't get into the alternative program it will mean homeschool next year, taught by moi. Which I'm terrified of doing, as I feel very underqualified and which I am also loathe to do because he needs social interactions in a classroom. It's so important for his communication development and for his self esteem and so many other aspects of his development.
We spoke with our speech therapist about transferring G from his current Special Education preschool class to the alternative (but not Special with a capital "S") program and she said to go for it. It made my eyes tear up to hear that she thinks he's ready. And tear up again when she said that when she first met G, it would have been out of the question, but now she thinks he can be part of a classroom with "normal" kids.
In the meantime, we are waiting to see if we get in. We are waiting, as always, to learn where the next leg of this journey will take us. It felt good to decide to try to get in the program now. My personal experience in most things has been that safe is sorry and I think it applies. I want to school dangerously, and parent wherever and however G takes me. Like the story of The Runaway Bunny, I am determined to find a place to fit into each day of his, each mood of his, each new challenge. To love him in whatever way he needs.
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